Risk management for people with inherited CDH1 mutations
The National Comprehensive Cancer Network (NCCN) provides risk management guidelines for men and women with CDH1 mutations. We recommend that you speak with a genetics expert who can look at your personal and family history of cancer and can help you determine the best risk management plan. You can learn more about risk management options in our section on Screening and Risk Reduction by Cancer Type.
People with a CDH1 mutation may also qualify for clinical trials looking for more effective screening or prevention for cancer.
Gastric cancer screening and prevention
- Experts recommend that people with an inherited CDH1 mutation have risk-reducing surgery to completely remove the stomach (prophylactic total gastrectomy) between ages 18 and 40. Stomach removal is not recommended for people younger than age 18, but may be considered for certain patients, especially those with family members diagnosed with gastric cancer before age 25. An upper endoscopy should be performed before surgery. Upper endoscopy involves passing a tiny scope with a video camera down the esophagus to the stomach.
- CDH1 mutation carriers who have not had their stomachs removed should have screening every 6-12 months by upper endoscopy with multiple random biopsies. This allows doctors to look closely at the stomach. The surgeon can pass a tiny instrument through the scope to take tissue samples from the stomach that can be checked for cancer.
Breast cancer screening and prevention
- Experts recommend that women with an inherited CDH1 mutation undergo yearly screening mammograms with tomosynthesis (3D mammograms) and consider yearly breast MRIs with contrast beginning at age 30 or earlier based on family breast cancer history.
- Women considering risk-reducing mastectomy should have a discussion with their health care provider based on their family history of breast cancer.
Other cancer screening and prevention
There has not been enough research to show a benefit from screening and prevention for other cancers in people who have a CDH1 mutation. For this reason, experts recommend managing these risks based on family history of cancer. Cancer screening and prevention research studies may be available for people with an inherited CDH1 mutation.
If you are a person with a CDH1 mutation, you can find peer support through the following FORCE resources:
- Register for the FORCE Message Boards to connect with others who share your situation. Once you register, you can post on the Share Your Mutation board to connect with other people who carry a CDH1 mutation.
- FORCE's Peer Navigation Program will match you with a volunteer who shares your mutation and situation and provide you with a free resource guide.
- Contact the FORCE impact leaders in your area to link to local support groups and other resources.
- Attend a virtual support meeting in your area.
- Read the stories from members of our community.
You can also find support through this organization:
- No Stomach for Cancer is a nonprofit with a mission to support research and unite the caring power of people worldwide affected by stomach cancer.
- FORCE's eXaming the Relevance of Articles for You (XRAY) program looks behind the headlines of cancer news to help you understand what the research means for you.
Health plan coverage of screening and prevention varies, and deductibles, coinsurance and copays often apply. If you need preventive services and your insurance company denies your claim, your health care provider can help you write an appeal letter, or you can use one of our sample appeal letters. Visit our section on Insurance and Paying for Care: Screening and Prevention for more information.